CSRF EXPANDS BOARD OF DIRECTORS
The CSRF is excited to announce the addition of Ellen Koretz Whitton and Lee Carlson to the CSRF Board of Directors. The addition of much needed personnel will assist the CSRF in meeting our objectives to promote awareness in the medical community and in the general public.
Ellen will join the Board as a Director. For the last several years, Ellen has volunteered her time to the CSRF and staffed numerous CSRF exhibits in the Seattle area. Her recovery inspired her to pursue an Associate of Applied Science degree in Social and Human Services at Seattle Central Community College, after which, she hopes to work with people living with chronic illness.
Ellen can’t pinpoint the beginning of her Cushing's disease, and attributed a number of the symptoms to having a full-time job and a small child. Then as Ellen says, “When I developed a constant, unquenchable thirst, my doctor diagnosed me with Type 2 diabetes, telling me that there was no cure and it would gradually get worse. I was counseled to "make lifestyle changes" and given oral medication. When my doctor recommended that I start injecting insulin, I asked for a second opinion. I was referred to an endocrinologist, who ultimately diagnosed me with Cushing's disease.” Ellen had pituitary surgery three years ago and her diabetes has resolved.
Given her experience with diabetes, Ellen will focus on raising awareness of Cushing’s in high risk groups, such as diabetics. Ellen says, “My own diagnosis was an extraordinary stroke of luck. With 3% - 5% of poorly controlled Type 2 diabetics potentially suffering from Cushing's, it is essential that Cushing's patients not get lost in the rising concern about the "diabetes epidemic". I welcome any opportunity to spread the word about Cushing's, particularly among diabetes practitioners and their patients. This may be where a great many people with undiagnosed Cushing's can be identified, and offered hope for a healthy life.”
If you were diagnosed with diabetes that resolved or got much better after treatment for Cushing’s and are willing to share your story with the media, or would like to assist Ellen in her efforts, please email Ellen at email@example.com.
Lee Carlson will also join the Board as a Director. Lee is a high school English teacher, Head Football Coach, and Assistant Track Coach in St. James, MN. Lee also directs the Mentorship program for the local school district. Lee has written for over a dozen newspapers and has done several speaking events to share his personal experience with Cushing’s.
It has been over ten years since Lee had a bilateral adrenalectomy due to bilateral adrenal hyperplasia that was causing his Cushing’s. He does not go a day without remembering the long years battling Cushing’s. As Lee says, “For about five years prior to that diagnosis, I suffered with symptoms such as depression, high blood pressure, restlessness, and I’d been through every imaginable test and medication. I was so fatigued, was having muscle spasms, and I couldn't sleep more than two hours at a time. After five years of going downhill, the diagnosis was more of a relief than something scary."
Lee says, “Life has been very good since then and I want to do what I can to help others with Cushing’s avoid the elongated period it took for me to find a diagnosis and to help speed their recovery. Obviously, increased awareness will help with both of those objectives. It still amazes me that so little is known about Cushing’s in the general public.” To that end, Lee will focus on what the CSRF can do to better increase awareness in the general public.
A MESSAGE FROM LEE CARLSON
Becoming a director for the Cushing’s Support and Research Foundation still feels a little fuzzy as I look ahead to the ENDO Conference in San Diego. My typical day begins with waking up my 1st grader, 6th grader, and freshmen at 15-minute intervals as our family prepares for school. I teach high school English and my wife is a 4th grade teacher so it is definitely a family affair. Along with coaching track and football, I do my best to catch the many other activities for my children in our Minnesota city of 5,600 people.
This winter, I responded to a call for those interested in helping with CSRF. An invitation to attend the Patient Education event in San Francisco followed and it was a warm welcome from Louise Pace and Karen Campbell. Getting to hear the finest experts deliver their expertise and respectfully answer questions from patients and their families helped me realize how important CSRF can be to so many.
In July of 1997 I had a bilateral adrenalectomy and a month earlier they went in to investigate a tumor behind my heart that was discovered during the testing for Cushing’s. The bad news was that it took them five years to figure out my condition and the good news was that I got all of the surgeries done in the summer so I did not have to miss any school and was back coaching football in mid-August. Looking back, it was too early to hit the ground running but I also feel that having a goal to be back with the team helped me recover sooner than if I had just been on my own. After about six months of waiting for medication levels to get aligned I have enjoyed my second chance at life. A good friend of mine who talked with me soon after learning of his cancer said, "If you get a second chance and you use it right, you don't need a third chance".
Since I am a newbie to CSRF, I can't speak to the intricacies of the organization yet but I do have some hopes for the future. Coming from a guy who went thirteen years between the time I was diagnosed with Cushing’s to meeting another person with Cushing’s I think it is vital to our organization to develop ways to connect our members to a larger community. What can you do to make that happen?
Can you share a story with you local newspaper, radio station, or television studio?
Look for special events that you can connect to.
Do you have connections to funding sources which could aid in the mission to increase awareness for Cushing’s?
What talents do you have that can make our organization stronger for those who need CSRF the most?
Take your second chance and make sure it is used in a way that won't make you want to wish for a third.
When people ask me what I like best about teaching I always respond, "I get to learn so much". I strongly believe in the power of you. Whatever your idea is, let's work together. Send a message to firstname.lastname@example.org and take a chance on adding your talents to the great things already happening with CSRF.
CSRF Exhibits at Diabetes Expo in Seattle
By Ellen Whitton
Once again, I represented the CSRF at the American Diabetes Association’s Diabetes Expo in Seattle, ably assisted by Lisa Bonner and her fiance Bob. Much of our work involved explaining Cushing’s to people who had never heard of it, as well as hearing about patients’ experiences. The Diabetes Expo is a bit different from other exhibits the CSRF participates in, as this conference is for patients with diabetes rather than physicians. This gives the CSRF an opportunity to talk with diabetics who may actually have Cushing’s. The Diabetes Expo is held in different locations through out the US. Upcoming Expo’s are June 26 in San Antonio, TX; October 9 in Minneapolis, and November 6 in Pittsburg (http://www.diabetes.org/community-events/). If you live locally and are interested in representing the CSRF at one of these, please contact me. I feel it is critical that we reach this high risk population.
One story really struck me. A woman told me she was being treated with Prednisone for severe asthma. Her face appeared bloated, she had fatty deposits across her shoulders, and said that she was bruising easily. Although I am not a doctor, the amount of Prednisone she told me she was taking sounded very high, so I advised her to go to the "Ask The Expert" booth and talk to an endocrinologist.
This got me thinking that at CSRF, we tend to focus on endogenous Cushing’s, probably because that is what most of us have experienced. However, exogenous Cushing’s due to prescribed steroids is a major cause of Cushing’s syndrome, and an area where we can raise awareness. I spoke with someone from the Arthritis Foundation, who was interested in obtaining information for arthritis patients who are on steroid therapy.
On the stage in front of our booth, a woman was promoting bariatric surgery for diabetics. I joined the audience and when it came time for questions, asked if she’d been evaluated by an endocrinologist before her surgery. She had not. This raises another issue - how many people with undiagnosed Cushing’s, unable to lose weight, have unnecessary and potentially dangerous bariatric surgery?
I made a helpful contact with the booth next door, a clinic serving Seattle’s large East Asian population. We talked about contributing CSRF material to their diabetes support group, and the possibility of translating some CSRF literature into several Asian languages. It would be great to get some of our literature translated into Spanish, too.
I came away with lots of exciting ideas. But I was also reminded that what people often need is someone who will listen to them. When we reach out to others, we help not only by speaking but by listening. To quote writer Dr. Abraham Verghese, "What treatment...is administered by ear?...Words of comfort."
Cushing’s Patient Education Day
Saturday, Feb. 27, 2010
San Francisco, CA
On February 27, 2010, the Cushing's Support and Research Foundation held a Cushing's Patient Education Day in the San Mateo, CA. We would again like to thank Corcept Therapeutics for sponsoring this meeting. The program consisted of a series of talks by physicians who are expert in the field of Cushing’s. A number of smaller breakout sessions were held in the afternoon to encourage interaction between patients and physicians. A transcript of the Panel Discussions can be found under Doctor’s Articles.
The day began with a presentation by Dr. Larry Katznelson (Stanford Univ.) on the Pituitary Gland and an introduction to Cushing’s. It was clear from this presentation that the pituitary gland is called the “master gland” for a reason; it controls many hormones! Dr. Katznelson spoke on the importance of each pituitary hormone, (growth hormone, ACTH, thyroid hormones, FSH/LH that effect the gonads, and prolactin) and included the effect of excess hormone as well as symptoms of hormone deficiency. He emphasized that testing for thyroid hormone deficiency in patients who have had pituitary surgery is quite different than testing in the general population.
Dr. Lewis Blevins (UCSF) then spoke of Testing for Cushing’s, which as patients, we can all appreciate that testing seems to take forever. Dr. Blevins emphasized that there is no one specific test that always gives the right answer, thus the need for multiple tests. While the majority of cases are straightforward to diagnose, there are those who are very difficult to diagnose. The degree of cortisol production from patient to patient varies substantially and symptoms do not always correlate with the degree of cortisol over-secretion. Dr. Blevins has found the evaluation of cortisol variations across a day (diurnal rhythm) to be valuable in diagnosis. If you have questions about testing or are having difficulty getting a diagnosis, this would be an excellent talk for you to listen to.
Dr. Marty Weiss (USC) then discussed pituitary surgery, including the need for patients to be treated by surgeons with extensive experience in pituitary surgery. Dr. Weiss discussed the need for treatment of Cushing’s, as if not treated, Cushing’s can be fatal. He also discussed reasons why some surgeries are not successful and treatment options following an unsuccessful surgery, including another surgery, radiation, or a bilateral adrenalectomy. Dr. Weiss recommends moving to bilateral adrenalectomy as the next step only when a patient has a negative pituitary exploration, meaning the tumor couldn’t be found. It is thought that patients with a non-visible tumor, can undergo a bilateral adrenalectomy with a much lower risk of Nelson’s, whereas the risk of Nelson’s (continued tumor growth) is higher in patients with a visible tumor that cannot be cured surgically, and radiation should be considered prior to bilateral adrenalectomy.
Dr. Blevins then discussed What to Expect after surgery. The long and short of this talk was that recovery from Cushing’s takes a long time. Patients need to recognize that there are a lot of physical and emotional changes going on during recovery. While some symptoms will resolve, others may just improve. Dr. Blevins suggested that we can help ourselves through our own attitude, educating ourselves, working with our physician to adjust diabetes and high blood pressure medications following successful treatment, keeping appointments, advocating for ourselves, accepting the support of others and finding ways to relax that take our minds off of Cushing’s and recovery.
Dr. Mary Lee Vance (UVA) then discussed the role of Radiation Therapy. Dr. Vance pointed out that radiation is usually not the first step in treating Cushing’s. Rather, it is used primarily after unsuccessful pituitary surgery and/or prior to adrenalectomy to prevent tumor growth, termed Nelson’s. The effects of radiation are not immediate and it can take years to produce remission of symptoms. Loss of other pituitary function is common following any type of radiation. Dr. Vance discussed the progress in the different types of radiation over the years, then focused on gamma knife.
Dr. Anthony Heaney (UCLA) then discussed medical therapy for Cushing’s. Dr. Heaney pointed out that just in the past 5 years, much progress has been made treating Cushing’s with medications. Dr. Heaney described the medications used, how they act and some published data on success rates for some compounds. He then discussed the newer treatments, such as pasireotide (a somatostatin analogue) and mifepristone that is currently in clinical trials.
Dr. Andre Lacroix (Univ. of Montreal) then discussed the effects of Cushing’s on the Brain. As patients, we all know that our minds and emotions are affected during Cushing’s. From various studies, it is clear that these effects are indeed real and not uncommon in Cushing’s patients. Dr. Lacroix discussed that proper amounts of cortisol are necessary for brain function and that either too little or too much is not good for the brain. From brain MRI scans of Cushing’s patients, it is clear that some brain volume is lost during sustained Cushing’s, however, on scans a number of years after treatment, it is also clear that some of the volume losses are reversed. While improvement is seen, this does not totally resolve in all cases. Neuropsychological testing also shows improvement over time, as does the ratios of some of the brain chemicals. The key is that recovery of our mental processes can take a substantial amount of time. For some of us, this was the first time that we had heard about the effects on our brain!!
Dr. Vance then discussed Cushing’s and Quality of Life. Indeed, many of us report that after Cushing’s, we just don’t feel the same. Dr. Vance again emphasized that recovery from Cushing’s takes time. She discussed a number of studies from the literature using a number of different questionnaires to evaluate physical and mental functioning. The good news is that while Cushing’s patients score well below the average population on such tests during active disease, improvements are very definitely seen after successful treatment. While not all return to the level of the general population, quality of life clearly improves.
Several hours in the afternoon were spent in breakout sessions covering the subjects of Coping, Testing, Options in Treating Recurrent Cushing’s, Pituitary Surgery, Radiation and Nelson’s, and Managing Permanent Replacement medications. These were smaller groups and permitted patients to ask questions in a specific area to several physicians.
In general, the ratings for the meeting were positive with 95% rating the overall meeting and the breakout sessions as Excellent or Very Good. As always when one puts on a meeting, things are learned. Some suggestions for the next meeting, were to spend more time on “patients” and let each give a summary of their situation, to better publicize the event, perhaps use a number of smaller sessions, and to pay attention to the speed of the presentations and the volume of information presented at one time.
Some of the attendee comments included: “This meeting was the best experience. I can't even imagine how I would have gotten through my illness without the Cushing’s Newsletter and the support from past patients. The Cushing's Patients Education Day was so beneficial. It was worth the trip all the way from Chicago. I met the most wonderful Doctors and patients from all over. The best was the Doctors presentations on the various topics relating to Cushing’s. It was nice to be able to ask them questions that pertained to our own experiences with Cushing’s and post-surgery. There was never a dull moment. Afterwards, all the Doctors participated in a panel discussion. By the time we all reached our Break Out Sessions, I felt a closeness to the Doctors and the other Cushing’s patients. This Education Day was just a wonderful closure for myself and my experience as a Cushing’s. I would love to help others that need any support .” (Gina - email@example.com.) Other comments were, “It was very enlightening to actually meet others who share the same disease/recovery process as I, and I learned a tremendous amount of information from all the physicians who took the time to attend and present their material. The physicians were generous with their time and were accessible.” (Lorraine - firstname.lastname@example.org ) Also, “It was so nice to meet some fellow Cushies! I think one of the main things that I came away with from the conference is that you are not alone in dealing with this awful disease, which I know is sometimes how I feel. The panel of speakers were excellent, and I hope I can attend another conference.” (Audrey- email@example.com)
The speakers also had some comments: “Congratulations on an outstanding program. The audience was obviously enthusiastic, and you assembled an outstanding faculty. For that matter, the program would have been informative to a group of internists and endocrinologists.” Dr. Marty Weiss
“I was very impressed with the attendees and their knowledge of Cushing's. I always learn something from patients who have had Cushing's. Thank you for a wonderful meeting.” Dr. Mary Lee Vance
“Congratulations on a wonderful job. It was a thrill for me to participate, and be of help in any way I could.” Dr. Larry Katznelson
“It was a pleasure for me to participate in the meeting and to interact with patients. Also, I think we had more expertise on Cushing’s assembled in the room, from both the patient and physician side, than I have seen at some outstanding international meetings.” Dr. Anthony Heaney.
These doctors generously gave of their time to help Cushing’s patients. Please take some time to view the presentations from this meeting at:
The CSRF Launches Facebook Fan Page
By Elissa Kline
Facebook (www.facebook.com) is a global social networking website where users can add friends and update their personal profiles to notify friends about themselves. It currently has about 350 million active users. Having a profile on Facebook is a great way to stay in touch with friends and family, and even a way to catch-up with long lost classmates and coworkers. And it’s not just for teenagers; people of all ages use Facebook to communicate with their friends and families.
Individuals or companies can create "Pages" which allow users to "become a fan" of an individual, product, service, or concept. Pages look and behave much like a user's personal private profile, but were developed as a means for companies and organizations to update and inform interested parties. Other organizations that you might be interested in following on Facebook include: the American Diabetes Association: www.facebook.com/AmericanDiabetesAssociation or the American Heart Association.
CSRF recently launched our own Facebook page and will soon be using it to help keep in touch with our members in real-time. Facebook will be a resource where you can find the most up-to-date information on drug trials, news, events, and other projects we are working on. Don’t worry: you don’t need to join Facebook to stay informed. As always our website will continue to be the best way to connect with us and our newsletter will continue to be delivered to your mailbox on a regular basis. Facebook will be yet another touch-point where you can interact with CSRF and find support and information. You can find a link to our Facebook page on the homepage of www.csrf.net or just search for Cushing’s Support & Research Foundation in the Facebook search field – if you see our logo, you’ve found us on Facebook!
If you aren’t already on Facebook, it’s easy to get started. All you need an email address. Just go to the homepage (www.facebook.com) and fill out the registration information. It is completely free to join and you won’t be spammed. Once you join, the first thing you will want to do is find your friends and family. Facebook will help you find them by searching your email contacts. You can also search for people by typing their name in the search box on the upper right-hand side of the page. You can customize your profile by adding a picture, and completing the form about your interests, favorite things, education and work. You can fill out as much or as little information as you want. You can also set up privacy settings to ensure that only the people that you want to see you information can see your information. Once you have everything set up, your friends will be able to leave messages on your wall for everyone to see and you can leave messages for them as well. You can also upload pictures and videos to share with your connections – you can even tag pictures of friends! Finally, you can also send private messages. Remember with Facebook, you can share as much or as little as you want.
You can easily use Facebook to stay up-to-date with your friends and even RSVP for events. Every time you log onto the site, you will see a newsfeed. In the newsfeed, you will find a listing of all the updates from your friends. If you have become a fan of the CSRF Facebook page, you will also see updates from CSRF in your newsfeed. And what about those events? If your friend plans a party and invites you using Facebook, you will receive a notice and can sign-in to the site to RSVP and get information like directions. As you become more comfortable with Facebook, you’ll find more and more advanced features. For example, are you always forgetting your friends’ birthdays? Facebook will show you a list of all the upcoming birthdays for your connections. The key is that Facebook is easy to use and can help you stay in touch.
Two major objectives of the CSRF are to put patients in contact with other patients and to facilitate the sharing of information between members. Facebook is a great way to connect with other Cushing’s patients and families. Keeping up communication is generally hard, particularly when you are coping with Cushing Disease, but once you’ve made a connection with someone on Facebook, the obstacles to maintaining communication will be eliminated. We hope that you’ll find us on Facebook and that you will form longstanding, mutually beneficial friendships with other members that you can maintain on Facebook as well.
An Update on CSRF Activities
In May 2009, the CSRF exhibited at the American Association of Clinical Endocrinologists (AACE) in Houston, Texas. This conference was attended by 1,100 clinical endocrinologists, most of whom had several Cushing’s patients.
Also in May, Ellen and Jackie, both from the Seattle area, exhibited at the Seattle Diabetes Expo (www.diabetes.org - Community Programs) which is an event held for diabetic patients at a variety of locations across the country. Ellen and Jackie also represented the CSRF at the Cushing’s Day at Swedish Neuroscience Institute, also in Seattle. This event was a 2-part meeting, with patients attending one session and physicians attending a separate session.
In September, the CSRF will be exhibiting at the Lawson Wilkens Pediatric Endocrine Society in New York City, which is also an international event this year. Approximately 3,000 pediatric endocrinologists and nurses are expected to attend. This is the first year that the CSRF will exhibit at this event.
The CSRF will also be exhibiting at the annual Clinical Endocrinology Update in October, in Atlanta, GA. In the past, this has been an excellent event.
CSRF Website Updated
Per the article in the last newsletter, thanks to generous funding from Novartis Oncology, the CSRF has been able to make some exciting improvements to our website! The new site has been moved to www.CSRF.net. Thank you to all of you that provided feedback on the new site by taking the survey on the homepage. We have tried to implement your suggestions and will continue to do so as we receive them. You can now leave a comment from any page on the website. We had a number of comments that the new search features made information much easier to find. If you haven’t already done so, please take a look at www.CSRF.net and provide your feedback.
We anticipate that by the time you receive this newsletter, you will already have received an email that the new Members Services area of our website is operational. Yes, it has taken a lot longer than expected, for which we apologize! If you are a patient, or parent of a pediatric patient AND we have a valid email address for you AND we have had some communication with you in the not so distant past, AND you have not indicated that you do not wish to receive email from the CSRF, you should have received an email asking you to log in to the secure, password protected Member Services area to change your password and Update Your Profile. This email came from firstname.lastname@example.org and was titled CSRF Member Services Now Available. If you do not have a current email address on file with the CSRF, or did not receive this email, please send an email to mailto:email@example.com!
Newsletter Survey Results
Following the mailing of the Spring, 2008 newsletter, the CSRF emailed a survey to those members with email addresses. Thank you to all of you that responded! We wanted to provide you with some results. Overall, 90% of you gave the CSRF newsletter the highest rating of “very good”, with no one indicating that it was poor. 83% found the information included in the newsletter to be “very useful”, with no one saying it was “not useful”. 60% of you requested more Doctor’s Answers, 41% more articles on Coping, and 38% more patient stories. The questions that we ask a doctor come primarily from emails that we receive. To expand this section, we need your questions! So, if you have questions for our doctor’s, please email them to firstname.lastname@example.org or mail them to the Boston address. 95% of you thought the doctor’s articles were written at a level that was understandable, 79% of you thought the grammar very good, 56% of you thought the newsletter has an “appealing” look, but 8% thought the newsletter “needs a new look”. There were a number of comments made that deserved an individual response. However, this survey was anonymous, so unless you left your name, we have no way of responding to you! You can always send an email to email@example.com to offer suggestions and comments. There was one excellent suggestion of a type of question and answer involving patients and doctors, that we may try to do for the next newsletter, either through the Member Services section of our website or by email. Thank you for your comments!
The Joy of Fundraising
Through the Paula Rosina Santoro Foundation, we have raised more than $70,000 over the past six years to fund the activities of CSRF. This year alone, we raised more than $10,000. It's been exciting and rewarding, but the premise of the fundraiser, "Bike and Hike with Mike" has run its natural course, especially with Mike on course for college.
We ask others in CSRF to consider doing their own fundraisers to help Cushing's disease patients and to provide more money for research. While Paula and Michael's unique story drew the attention of the media, the fact is that most of the people who contributed year after year to the "Bike and Hike" weren't attracted by the media stories but were, rather, friends, relatives and neighbors who knew us and the twins. Most of the money was raised in small amounts-under $50, typically-and people seemed to appreciate that the fundraiser was held every other year (which also made planning easier for us).
There's a lot of good fundraising advice on the internet or available through local libraries. Here are just a few ideas. Keep an eye out in your local newspaper for opportunities to fundraise. Go bowling for dollars, miniature golfing, have a bake sale, garage sale, a volley ball game. Check out your local sports teams, theaters, movies, museums and work with them and fundraise. We just participated in the local mall's special event, selling tickets to an exclusive evening of shopping during the upcoming holiday season.
Take the plunge and try a CSRF fundraiser! All you need to do is ask, people's generosity will do the rest. You'll be surprised how many of your friends and relatives want to help, and understand the importance of teaching people more about Cushing's and its consequences.
John Santoro and Pam Bennett-Santoro
Paula and Michael's parents
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We Still Need Your Stories!!
You can email them directly to Laura, our Patient Stories editor, at:
firstname.lastname@example.org, or to cushinfo@CSRF.net.
We Need More Members to Contact
Listed on Our Website!!
We continue to need members willing to post at least their emails under Patients to Contact on our web site. Experience has shown, that this doesn't translate into more junk email. We'd like to have someone listed in every state. If you're willing to have your information posted, please email cushinfo@CSRF.net
or update your Member Profile!